BEDFORD HILLS, N.Y. – Polycystic Kidney Disease (PKD) is one of the most common life-threatening genetic diseases that affects 12.5 million people worldwide, including 1,600 in Westchester County alone.
This Saturday, community members will join with friends and families from the Hudson Valley to walk in Bedford for a cure at the Ninth Annual Hudson Valley Walk for PKD.
The disease causes cysts to form in the kidneys, interfering with its ability to filter toxins out of the blood, resulting in eventual kidney failure.
The two-mile walk, which begins at Bedford Hills Memorial Park, will raise money for research to find a treatment and a cure; currently, dialysis and transplantation are the only treatments.
Hudson Valley Chapter Walk Coordinator Josie DaCosta of Suffern was six months into her marriage with husband, Darien DaCosta, when she was diagnosed with the disease in 2008 during a routine physical, finding out she had only 20 percent kidney function.
Darien DaCosta began a Facebook campaign to try to find a potential donor, and luckily for Josie, her youngest sister Frances Napolitano turned out to be a perfect match and donated in October 2009.
This genetic disease has two types and it is common for the disease to be passed down to multiple children in a single family. A diagnosis of Autosomal recessive PKD (ARPKD), which is rarer as both parents must have the gene, very often leads to death in children.
The effects of Autosomal dominant PKD (ADPKD) are usually cumulative as the kidneys gradually slow, so people tend to get diagnosed with ADKPD as older adults.
This late-in-life diagnosis is one of the reasons many people have never heard of the disease even though it affects so many people, said Darien DaCosta. He and his wife became Hudson Valley Walk Coordinators in 2011 and Chapter Coordinators in 2012.
“When you look at someone who has ADPKD, you might not really be able to tell that anything’s going on with them,” he said. “People don’t think it’s as serious as it is because the person looks fine.”
Darien said the PKD Foundation funnels the majority of the money raised into research rather than advertising. “The walks are usually the way we spread the message,” he said.